Tag Archives: #progeria

Dream Day with Nihal

17 Feb

It was a warm Friday afternoon when Mumbai was getting ready for the Valentine’s eve. One kid who started from home was told by his dad that it was another routine Doctor visit. He was 14-year-old Nihal Bitla – suffering from Progeria. But he didn’t know what lay ahead of him in the evening. Me & his father had planned a surprise visit for him to Lamborghini Mumbai’s showroom. As he reached & stepped out on the road, he realized that this was something unusual. He saw the Lamborghini Bull in the logo outside & looking at him it instantly struck Nihal that this was going to be a special evening. IMG_1838

When I went out to greet him, he said with a twinkle in his eyes “Dinesh Uncle, I knew that you were involved in this.” I asked him “Where is the Doctor here?” and he pointed to the Lamborghini logo. Just then Gautam Madnani from Lamborghini Mumbai came in to welcome him. Gautam had helped us organize everything so well.

This story started earlier in December 2014, when I had spent a day chatting with Nihal at his Bhiwandi residence and knew that Lamborghini was the thing that moved him. IMG_5904He was so passionate about Lamborghini that he could tell me the different models and their specialities like a Pro. He is a keen net surfer and thanks to Srinivas – his father, he had been gifted with a Mac Book to learn. So though Nihal had to opt out of school, his learning is excellent. His dominance on the subject of Lamborghini baffled me. So when I spoke to Srinivas, he said he had tried earlier for a test drive with Lamborghini but could not get through to anyone. During Nihal’s visit to the USA for his treatment, we wrote to Lamborghini there, but at that point they couldn’t help us.wp_ss_20141209_0001

After Nihal’s return, when I shared this back with MediaMedic team and my family. My wife – Ketaki’s friend – Komal Machindar – happen to know someone who happened to know someone and that’s how we got in touch with Gautam Madnani at Lamborghini Mumbai . Gautam was kind enough to help and went out of his way to make special arrangements.

We had earlier planned the surprise on Nihal’s 14th Birthday on 20th Jan, which apparently happened to be his father’s birthday too. But since Nihal was unwell it got postponed. But on 13th Feb, the plan was no different. My team at MediaMedic had worked on a lovely card 10408687_10152741385648087_7896095462467966616_nwhich we handed over to Nihal and he was excited to see his pictures there. The team was present to co-ordinate and wish him.IMG_1695 A few select media friends were invited too as we wanted to spread the awareness of Progeria.

It is really thanks to the Progeria Research Foundation, whom I had the good fortune to meet their whole team when I was in the USA for some work. Nihal had visited them in December 201410882241_10152614487583087_3287826950105762714_n and was enrolled as a part of the new clinical trial drug. Srinivas was telling me that in under a month now with the new drug his appetite seemed to have improved and his weight gain is also much better. He also mentioned how overall he seemed to have more body mass and his knee flexion had also improved.

As a part of the GlobalHealthPR group, we have been actively supporting the Progeria Research Foundation since 2009 in actively searching for Progeria kids across the globe as a part of the ‘Find the Other 150’ campaign. Nihal was very happy visiting Boston and seeing kids like him and interacting with them. 1549327_1008028179229634_2170806707860788628_nHis father said that for the first time he seemed to understand the disease well and has turned very positive since then.

So here he was sitting inside the white Huracan model and admiring the interiors.WP_20150213_15_42_04_Pro

When Gautam started the ignition, he loved the firing of the car and was pretty mesmerized with it.

And finally for the big moment, when Gautam himself took out the red car on the road, a crowd gathered to watch. Nihal sat proudly with his dad next to the driver’s seat, ready for his dream ride which he had waited for years. WP_20150213_16_45_53_ProSo the next 30 minutes he was speeding down the Mumbai roads passing the Worli Sea Face, feeling the power of the Lamborghini.

And then back at the showroom, it was party time with his small bunch of family & friends we had a cake cutting. IMG_8032And guess what Lamborghini gifted Nihal – his favourite Orange Avantador model – and was he thrilled? He was on top of the world at that moment. And for his personal collection, he posed with the Showroom cars giving the photographer some of the best shots.IMG_1848

And then it was time to head home. Nihal called me close and said, “Dinesh Uncle, you know what? I had already visualized this day many years back”. I didn’t have any words to say on this, as this came straight out of Norman Vincent Peale’s book – “The Power of Positive thinking” IMG_1733

Mumbai Mirror carried the article the next day. This day was one that gave me immense satisfaction internally to me and reminded me of the day I spent interacting with Progeria kids at the program organized by the Progeria Research Foundation in Washington DC. 44375_638141606202671_742371028_nGuys salute to the good work that you guys do and the dedication to the cause that you have! Finally the icing on the cake was when on the next day I got this message from Nihal:

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Cheers